Back to previous page


Post Most

GOP hopeful Rick Santorum campaigns with a seriously ill daughter at home

By ,

SIOUX CITY, IOWA — At the lectern in a packed convention center last month, Rick Santorum spoke haltingly, not for the first or the last time, about his seriously ill youngest daughter, Isabella , who has the genetic disorder Trisomy 18. Half of all children with the chromosomal anomaly, more common in girls, are stillborn. And of those who do survive, only one in 10 makes it to her first birthday.

“I have a little girl who’s 3 1 / 2 years old,” the Republican presidential hopeful said in his dinner speech at the annual “Defenders of Freedom” event, hosted by Rep. Steve King (R-Iowa). “I don’t know whether her life is going to be measured — it’s always been measured — in days and weeks. Yet here I am” — on the road so often, he was the first of the current GOP contenders to visit all 99 Iowa counties. Why? “Because I feel like I wouldn’t be a good dad if I wasn’t out here fighting for a country that would see the dignity in her and every other child.”

His is easily the most searing personal narrative offered by any candidate this season. And when he speaks of Bella publicly, it is almost always in conjunction with his top policy goal of dismantling the health-care reform legislation, which he sees as a threat to those like her, “on the margins of life.”

Yet after he shared the story of her struggle and his decision to run anyway — not so much in spite of her fragile condition as because of it — people at King’s event didn’t seem to know how to respond; as the former Pennsylvania senator slowly worked his way through the emptying ballroom after the dinner, nobody mentioned his daughter, though one woman asked if his children ever got to travel with him.

In a heartbreaking situation, and running near the back of the pack in the polls, Santorum said the campaign has been “incredibly hard” on his family — emotionally and financially. He’s given up all paid employment, including his work for Fox News, to make the run.

Of course, all families of presidential contenders make extraordinary sacri­fices, surrendering privacy, dignity and, sometimes, the inheritance in the hope that their loved one catches on. And other candidates have crisscrossed the country despite a serious illness or other pressing family matter back home. Democrat John Edwards was pilloried for continuing his 2008 presidential campaign after his wife Elizabeth’s cancer came back, though we now know that it was she who insisted he stay in the race. (And while the disapproval may have been warranted, it turns out we had the cause all wrong.)

The ’08 Republican vice presidential nominee, Sarah Palin, was criticized for running while parenting young children, including an infant with Down syndrome. Either out of compassion or — more likely — because he’s polling so poorly, Santorum has been spared that kind of opprobrium.

‘I really struggled’

But the demands on his family, as he described them in an interview after the dinner, have been particularly punishing. He’s on the road virtually all the time, while his wife, Karen, cares for Isabella full time. (Karen Santorum was not available to talk.) Of their seven children, the oldest of whom is 20, he said, “They have opinions all over the map as to whether they want me to do this or not.”

Even in his own mind, Bella’s condition argued both for and against a run.

“Life expectancy wasn’t particularly long, and just the idea of going off and doing something like this was something I really struggled with,” he said.

The deciding factor, he said, was that “we see with every socialized-medicine country, which is absolutely where we’re headed, those on the margins of life are treated differently. . . . They’re not given the care, the resources aren’t allocated because it is very costly, and my little girl would probably be seen as — I hear, not only from anecdotal but actual evidence from other countries — that children like this simply do not get care.”

Though Democrats have barely answered this charge, Santorum’s reasoning is debatable. Unlike in countries with socialized medicine, the new health-care law achieves its goals almost entirely by increasing access to private insurance and private providers. The law’s supporters say children like Bella will be better off because insurance companies will no longer be able to impose annual or lifetime limits on coverage. And even critics of the legislation generally applaud its provision barring insurers from denying coverage because of a preexisting condition or disability.

What Santorum didn’t tell the woman who asked whether his kids travel with him is that when Bella does come along, the family has to pack all the necessary medical equipment and hope for the best: “You think she’s fine, and then one cold and she’s this close to dying.”

In the three weeks she spent with her dad and the rest of the family in Iowa before the straw poll there in August, that happened twice, he said. “We were in a hotel room, and I had to decide whether I was going to work — go out and do my town hall meetings — or stay and take care of her.”

In the end, he did some of both, and for two or three days “was pretty much up all night. She has a lot of difficulty breathing, a lot of complications as a result of that.” The situation was particularly “gut-wrenching,” Santorum added, because “we wanted to protect her privacy at that point.”

That changed after the GOP debate in Las Vegas on Oct. 18, the same day Bella had another surgery. His wife “had had a tough day” without him, he said, and when his turn came to introduce himself to the audience, Santorum said he would be taking the red-eye home to Bella and mentioned that she was recovering from a procedure. That comment drew so many queries about what was wrong, he said, that he and his wife decided to put out a video explaining their daughter’s situation.

“I look at the simplicity and love she emits,” he says in the video, “and it’s clear to me we’re the disabled ones.”

He also spoke in detail about Bella’s situation at the Nov. 19 “Thanksgiving Family Forum” of GOP candidates, held in a Des Moines church. Santorum cried as he said he realized that initially he hadn’t dared to let himself love his daughter, whose illness was diagnosed shortly after birth, so it wouldn’t be as hard to let her go. Rep. Michele Bachmann (Minn.) and Texas Gov. Rick Perry, his rivals, both reached out to comfort him, and he said some voters have done likewise.

“A radio producer I know called me. She had seen the Bella ad — well, I don’t want to call it an ad — and she said she had a friend who was a staunch liberal Democrat, but has a child with severe health implications,” and was not only moved but swayed by the video.

The goal: ‘To open people’s eyes’

The point of his run, and indeed his whole political career, he said, is “to open people’s eyes to things they maybe ­haven’t thought through. I don’t think most Americans think through life.”

Why would that be? For the second time, Santorum went back to a favorite quote, from the social critic Christopher Lasch, author of “The Culture of Narcissism.”

“Like Lasch said, ‘We all get up every day and tell ourselves lies so we can live.’ We all do it; I’m not pointing the finger. . . . With all the things going on in the world, if I sat here and really thought about what I should be doing?” To some extent, he said, “you have to lie to yourself” or else be paralyzed.

For example? “Think of what’s going on in Central Africa. Do I have an obligation to go down there and stop that carnage? We all sort of say, ‘I’m just one person, this is bigger than me,’ just so you can go on. You can’t focus on every problem. Is it telling yourself a lie? Sometimes it is,” he concluded, “because sometimes you do have a responsibility, particularly if it’s close to you.”

It was late by then, and the candidate hoped, he said, to check in with his family before grabbing a few hours’ sleep, then heading off to an early morning Mass and another full day of campaign events.

© The Washington Post Company